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Grand Poohbah
Member Since Feb 2012
Location: Eastern MD
Posts: 1,513
12 22 hugs
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#1
I've searched from Philadelphia to Baltimore and can't find any therapists (or treatment centers) who treat dissociation who take Medicare and offer in-person visits. (I'm not going to do virtual therapy. I tried that once.) I've talked about my dissociation which started 45 yrs ago with every Dr, therapist and hospital I've been to the last 25 yrs and NO one wants to discuss it.
I've had all 4 stages of dissociation in my life mainly not being able to identify with myself and having derealization badly in my teens. I told the top Psychiatrist at Johns Hopkins that dissociation and severe mood disorder damaged what was left of my personality in my teens/20's and he was absolutely dumbfounded and didn't respond. I don't know where to turn and I'm very sick. My present psychiatrist won't discuss any of this and still wonders why I am hopeless and haven't liked myself since I was 13. __________________ Forget the night...come live with us in forests of azure - Jim Morrison |
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Wise Elder
Member Since Mar 2009
Location: 8CS / NYS / USA
Posts: 9,159
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#2
Quote:
my first thought in reading your post is 25 years of bringing up the topic of "dissociation" wow thats alot of time. here where I am there is the saying - do the same thing over and over again get the same results. If you want to get a different result do something different. 25 years of trying to get treatment providers to discuss "dissociation" with you has gotten you nowhere, 25 years of searching for a "dissociation" treatment provider has gotten you nowhere. same thing same result time and time again. maybe its time for a change. Dont look for a "dissociation" treatment provider, dont focus so much on the word "dissociation" look deeper at your life and changes you want to make in yourself and your life that will help you to dissociate less. After 25 years of therapy and seeking out psychiatrists you know you best, you know what types of therapy there are and you know what kinds of treatment providers you work best with in the past. think about what you do know and make some changes. they wont discuss "dissociation" with you, ok look deeper beyond the word "dissociation". are there any issues that ......cause...... you to dissociate? work on those for that is working on dissociation. in other words, take the word "dissociation" out of the conversation and focus point, by looking deeper to what things about you and your life you want to change, which will change your "dissociation reactions." As for locating treatment providers. here in the USA treatment providers are trained in therapy thats what their job is. they are trained in recognizing mental disorders and trained in developing treatment plans by using approved, present day therapy approaches - CBT, DBT and so on and so forth. so rather than looking for a "dissociation" treatment provider, think about what ............type.............of therapy you want to do. look for a treatment provider who does the type of therapy you want to try doing. are you interested in doing CBT, look for a therapist that does Cognitive behavioral therapy, if you are interested in DBT look for a therapist who does DBT and so on and so forth. focusing on "dissociation" and trying to find a "dissociation treatment provider for 25 years has gotten you nowhere so maybe take the word dissociation out of this and approach it from your deeper issues that are .........causing........ you to dissociate and what type of therapy you want to do will get a different result |
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![]() cool09, unaluna
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Grand Poohbah
Member Since Feb 2012
Location: Eastern MD
Posts: 1,513
12 22 hugs
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#3
Quote:
I responded to paxil in 1996, got off disability, took a job at a law firm then took a job with Air Force in NM (and all my superiors did was criticize me because I couldn't hold a conversation - I couldn't talk after I started dissociating at 13 because I was so detached from myself and couldn't hold a conversation until a few yrs ago) and paxil stopped working after 5 years. Then I tried holding a couple very, very simple jobs and couldn't do it so I filed bankruptcy, moved back to PA and went back on disability and Dr I saw said I was bipolar (I have agitated depression) and put me on every mood stabilizer for 3 yrs with no response at all! I've had 4 girlfriends in my life which never lasted very long because I couldn't hold a conversation and I traveled to Europe in 2001 twice to meet a Russian girl I met online and it was a disaster!!! Quote:
I've had anhedonia really bad last 15 yrs and don't enjoy or can do anything anymore! I've loved music my whole life - I played electric/classical guitar since 14 and I'm starting to lose interest in music now. I haven't been able to build ANY confidence the last 45 years for some reason (I guess because I have a hard time feeling myself) and it makes me SO frustrated! I've seen tons of therapists since 1993 and they have all been incompetent. I had one therapist who I saw for 2.5 yrs who was the only therapist who listened to me but she only gave me general information like every other therapist and she had me walking, riding a bike and swimming and I couldn't stand any of it and none of it helped my mood or energy. She never told me how to manage my acute anxiety - all she said was "You have to manage it!" and I had NO clue what she was talking about! I've been trying CBT since 1992 and it doesn't help at all because my mood feels so horrible! I see a new, young therapist on Tuesday and I don't know if it's going to work or not...I'm a complete mess! __________________ Forget the night...come live with us in forests of azure - Jim Morrison |
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Grand Poohbah
Member Since Feb 2012
Location: Eastern MD
Posts: 1,513
12 22 hugs
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#4
Psychiatrists, therapists and doctors in hospitals don't want to talk about dissociation one bit!
I just figured out 10 yrs ago that I dissociated in my teens/20's/30's after doing some research (and I'm 60 now and still have residual effects from dissociating). I had NO clue what was happening to me between the ages of 13 and 50. I was absolutely fine before 13: had lots of friends, was happy, joked around a lot. Then I started getting real anxious around girls at 13 and started to feel extremely strange: I didn't feel ANYTHING around my family or friends anymore - I didn't find my friends enjoyable or funny and became very detached from myself and couldn't feel myself and I couldn't talk because I was so detached. I didn't talk for most of my life. I found out that I had all 4 stages of dissociation including dissociative amnesia and derealization (It's very hard to explain but as a teen I didn't feel real and everything around me seemed unreal - when I looked in the mirror I didn't feel real at all.) So I've been telling all of this to inpatient and outpatient doctors and therapists (who have all been COMPLETELY incompetent) the last 10 yrs and NONE of them will talk or ask about it (and I've been hospitalized maybe 20 times the last 10 yrs). I get the feeling none of them understand dissociation at all.I told all of this to a resident at Johns Hopkins (who I thought I had a good connection with) and she didn't say one thing after I explained all of it. I also saw one of the top psychiatrists at Johns Hopkins 3 yrs ago and told him that severe mood disorder and dissociation as a teen "damaged my personality and took away all the qualities that I had before 13" and he said "Damaged your personality?" and then was completely dumbfounded and didn't say another word. I've seen 5-6 therapists the last 1.5 yrs and they were ALL dreadful and incompetent. The last 2 therapists I saw didn't say a word to me every visit. Then one finally spoke and said "I'm not sure if I understand you or not" so I never went back to him! I saw another therapist who wouldn't stop talking - I had panic attacks in her office every visit and I tried to explain my life and she wouldn't let me talk! So I stopped seeing her! I told my present psychiatrist all about my dissociation (and that I was told at Hopkins that I have Asbergers) and he didn't say much. And he's the best doctor I've seen in 35 years! He is young and bright and cares about me and says he wants to help me (I've been extremely sick since he started me on prozac 8 mths ago - all of my 5-6 symptoms are extremely severe including giving me insomnia. He stopped prozac 6 mths ago and nothing has changed at all!). My mood has been absolute torture since I started prozac for some reason and I tried to kill myself 6 mths ago - I had to do something because every second was torture so I tried to hang myself and it didn't work! And I will not go back to any hospital - all they've done the past 35 yrs is abuse me and ignore me because I can't do anything and I have PTSD from the hospitals. I've been to every psych hospital between Philly and Baltimore the last 35 yrs. I have no idea how to solve my feeling of not being able to identify with myself. I still don't feel anything around people and I can't connect with anyone I talk to. __________________ Forget the night...come live with us in forests of azure - Jim Morrison |
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![]() 16PennyNail
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Member
Member Since Mar 2024
Location: In the southern United States
Posts: 346
99 hugs
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#5
I am out in the sticks of East Tennessee, and I have an online group I volunteer for now when I feel like it got me on the schedule of possibly the most dynamic trauma team in existence. A psychiatrist and a psychologist who collaborate in private practice. The online organization is RAINN. Their website is a goldmine of providers if it is a different kind of trauma. If it is what RAINN deals with, they have extensively trained volunteers to assist you. I am on every Tuesday and Thursday night from 7:00 pm to 10:00 pm. If there is a provider near you, it is a good resource. there are quite a few of us, and RAINN has been around for a minute.
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Grand Poohbah
Member Since Feb 2012
Location: Eastern MD
Posts: 1,513
12 22 hugs
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#6
Quote:
Anyway, paramedics and police came out and I couldn't calm down because I felt so bad. I told the paramedic I didn't want to go to the hospital and told him my life story and he was very nice and said he understood everything I said. After 45 minutes he said my vitals came down and I was coherent and saw no reason for me to go to the hospital. But he said he wanted me to talk to Crisis. So I've talked to Crisis 6 times over the last 3 mths and NONE of them listened to a thing I said! And 2 of them hung up on me! I will never call crisis again! Two of them told me I need to give meds a chance and experiment with different doses and I told them that's EXACTLY what I've been doing the last 35 years with 99.9% no relief and they didn't listen! They also said I needed coping skills. I told them coping skills are only good if you enjoy doing things - I've had anhedonia really bad the last 20 years and I don't enjoy anything except music anymore. Therapists have been a complete joke the last 35 yrs. I was in therapy for 3 yrs a couple yr ago and she had me walking, riding a bike and swimming and I couldn't stand any of it! And none of it helped my mood or energy so I quit! I've exercised extensively my whole life and it never helped my mood or energy at all. I swam every day 10 yrs ago for 8 yrs and felt fantastic for 2 hrs afterwards then went back to feeling horrible the rest of the day! And I had to take a nap every afternoon! (17 ECT treatments in 1992 destroyed my energy and nothing I've tried has helped since. After ECT I spent 2 yrs in bed, went on disability and into a halfway house which was traumatic!) And I've had 4 more ECT trials since then with no relief at all! And my Dr stopped prozac 6 mths and nothing at all changed! It gave me insomnia and my days and nights are still screwed up. I'm sleeping now but my sleep is absolutely horrible! I get to bed around 5-6AM and wake up several times in a terrible mood and get up after noon totally exhausted and in a horrible mood and it takes me several hrs to get out of bed. Things have improved a little the last 3 wks since I started 3 new meds - my symptoms are manageable for 4 hrs or so and I can go out now (going out the last 8 mths was horrible and difficult because of my energy, irritability and not feeling like myself). But the rest of the day I have to lay down because my energy and mood are not very good. And I told my Dr last week I can't go on like this. I want the WHOLE day to be good and all he said was "At least part of your day is good". He doesn't get it! And no one else does! He prescribed caplyta this week and said it would help me and my insurance covers it but it's $700! I called caplyta customer service to see if I can get a discount and they said maybe if I get a voucher from my Dr. I wrote and called my Dr the last 2 days telling him about this and he never responded! I want to take caplyta REALLY bad! Nobody understands what I went thru when I was younger and dissociated. No health professional the last 10 yrs has wanted to talk about it or my personality disorders or asbergers. I stopped feeling things around my family and friends when I dissociated in my teens/20s/30s and had all 4 stages of dissociation mainly being not being able to identify with myself. I couldn't feel myself and couldn't talk at all because I was so detached. I didn't talk for most of my life. I just learned to talk a few yrs ago and I still feel strange when I talk - I don't feel anything when I talk and I still don't fell anything around people or feel I can connect with anyone. A resident at Johns Hopkins in 2017 said I had asbergers and didn't explain it and didn't tell me how to get help for it. Another resident did send me to Hopkins Autism clinic and it was the WORST healthcare I've ever had! The Dr and therapist didn't want to know a thing about me so I stopped going! I really don't think I have asbergers, I still feel I have residual effects from dissociation because I've had to relearn everything over since that happened - I lost the ability to connect with and enjoy being around people. I told my present psychiatrist all of this and he raised his voice and said "You're trying too hard. You have a loop in your head and you have to stop!". And my present Dr is the best DR I've had in 35 yrs believe it or not - he cares about me and tells me he wants to help. All the psychiatrists I've seen between Philly and Baltimore the last 35 years have been completely incompetent and could have cared less about me! Thanks for your reply but I'll never call Crisis again. __________________ Forget the night...come live with us in forests of azure - Jim Morrison |
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![]() 16PennyNail
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Member
Member Since Mar 2024
Location: In the southern United States
Posts: 346
99 hugs
given |
#7
I am sorry that you are in a place where you feel no one understands you. Along with the therapy you have done, the doctors you have seen, calling crisis. There is an implication there; you even state that people simply are not listening. I understand your concern about never going back to a hospital. If they ever think I am going into one again, they had better come heavy as that will be a tumultuous day. I've been through everything I had to endure since I was 14. I have cancer. I have been on the Covid train four times. I can tell you that, in my opinion, I have had to spend
much time in hospitals. After two attempts to animate me through more of this, I had my right lung removed. Two rounds of chemo and have been irradiated so much that I am not sure I don't glow in the dark. If I was healthy and given the choice, and was not 53, between having to be in extreme combat or being in a hospital. Give me my equipment and roll the bird in. Somalia was safer than any of those places. Worse, I am a trained and still licensed physician who feels this way. That is an explosive statement about our medical system. When one is isolated and feels as if no one is listening to them, caring, or understanding, it is an utterly horrible feeling, and I wish circumstances and things were as they are. I am someone initially intertwined in that feeling. People think I am weird; I look directly at things and slice through them. You would be surprised at how many are uncomfortable with that concept. As far as being a good listener and knowing what you are describing. I wish I were in your circle as I would listen to you. My whole life has been in the trenches, and I know what that is all about. I don't have to have Aspergers to be able to empathize with you. I am glad that you found a good doctor; I have had some good ones who retired, and I have always been a late arrival. My current clowns seem to have a strategy of helping me by inducing a coma. I nicknamed my original psychiatrist, a.k.a. 10 Yards and a Cloud of Xanax. That's just for starters; I have three doctors prescribing stuff; they must have some kind of feud going as they refuse to ever talk to one another. The meds I am on have so many interactions that if you typed them into Medscape, it would blow up. My mistake with the pain management folks from Tennessee Cancer Specialists was that it would be 4 writing and digitally sending in scripts. I don't think he talks to any of the others, either. if there is any way I can ever help you, I will, I am weird but steady. I am so terribly sorry you have had such a hard time. __________________ |
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Grand Poohbah
Member Since Feb 2012
Location: Eastern MD
Posts: 1,513
12 22 hugs
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#8
Wow, you've been thru a hell of a lot! I don't think I could ever go thru chemo after watching my father go thru it for yrs with prostate and bladder cancer. Drs told him if chemo didn't work for his bladder cancer they could always make him a new bladder and my dad says he doesn't want to go thru that. He takes like 15 pills/day including a female hormone which keeps his PSA levels low. And I could never deal with a major surgery. And inducing a coma sound extremely dangerous and very scary. I don't understand at all why some people suffer from physical and mental problems. If there truly was a God none of this would take place, imo. That's why I'm not religious one bit. I think everyone should be rewarded at the end of their life for getting thru their life and given another life to live. But we all end up in the same place at the end.
__________________ Forget the night...come live with us in forests of azure - Jim Morrison |
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![]() 16PennyNail
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Member
Member Since Mar 2024
Location: In the southern United States
Posts: 346
99 hugs
given |
#9
It is a vexing question why some of us have to suffer so much. My close friend, whom I speak with every night on the phone, visits me once a week. He is a Baptist Minister, and I am a Methodist. I joke with him and tell him that on his part, over the difference, nobody's perfect. We sometimes have deep discussions over issues, and he is just as disillusioned as I am. I told him it was possible; life
here was set up for practice for those who go to a place that is not so good. He was at a loss for words to debate that one. I picked up being a Methodist as I used to teach at a Wesleyan college sometimes in the summer. They are run by the Methodist church. He and I are both moderates and don't try to set about telling everyone else how they should believe. I know I am not, and he is not judgmental. I have had my share of things; we are good friends as we have known each other since middle school, and he, too, has had many problems. Taking with him every night and seeing him darken my door are the few things I look forward to now. I am not trying to discuss religious beliefs outside of the threads designated for them. It is just stuff biographical about me. For all of that I have been through, I am still here, able to type this to you. As to why it is so? I don't know. __________________ |
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